Autism: To Hype or Not to Hype
Sarita had never heard her 6-year-old daughter Saina calling her “ mama” till now. She could only hear her humming, teeth grinding sound, and occasionally non-stop shrill cry for hours. Being a member of a big joint family ( in many Asian countries still stay together in a big extended family), with parents-in-law with the family of brother-in-law, there is always distress and dispute among family members. All the family members, including Saina’s father thinks the root cause of her daughter’s behavior is because of Sarita. They think Sarita is not able to handle and give proper care to the girl. Sarita is depressed. Can Saina’s condition be prevented or minimized? Is it Sarita to be blamed?
Rama, a mother of a 16-year-old boy, Ram with severe autism went to see a doctor as she wants a prescription for her son and herself that could take their lives. A week prior, there was a wedding ceremony at home. It was Ram’s sister’s wedding. As with any Nepali wedding, this wedding ceremony was also filled with loud music, dance, and bright colors. As the bridegroom was approaching with loud live music, Ram became more and more restless and aggressive. He could not bear all these sensory inputs. He pulled his sister and then pushed her to the wall. The bride, instead of vermillion on her forehead ( colored cosmetic powder worn by married Hindu women along the part of their hairline) painted in her own blood. Instead of going to her new home, she landed in the emergency of the hospital. Could this be prevented?
Sagun, an eight-year-old boy, had to change eight schools in a year period. Every school he got enrolled in could not handle him because of his hyperactivity and disturbance in class. Parents of other children warned the school administration that they will withdraw their children if Sagun continues in the school. The distress of the parents was insurmountable. Could this be prevented or minimized?
Raj, 29 years, is a computer engineer and works in a renowned company. He is good looking but he does not have a partner and he feels lonely. It is not that he was never approached or he had never approached to someone but after about 2 to 3 weeks into the relationship, he always lands with the disapproval of that new relationship. His parents always ask him why he is not stable or what he is looking for. And he always wonders why he is not able to continue. It is not only with new partners but also with friends. He has only 2 friends. They do meet often and one of the friends confided that he only talks about graphics and nothing else. Even when they meet they hardly talk to each other for more than 5 minutes. But they enjoy each other’s company silently. Can Sanam get his answer about why he is like that?
Prisma, 42 years old is a mother of 2 children. The older one is 11 years daughter and the younger one is a 6-year-old boy. Her daughter was recently diagnosed as having autism. She is a bright kid, good in academics but has difficulty in socializing and coping with even small changes in daily activities. After the daughter’s diagnosis, the mother also received the diagnosis. During the assessment, all the questions that were asked of the daughter exactly matches with that her condition. She gets anxious when she has to go to gatherings, difficult to counsel her patients, so switched to research where she does not have to talk to many people, cannot multitask, and she also has difficulty transitioning from one activity to another. Because of this, she has severe anxiety. When she got diagnosed at 42 years, she expressed that all the burden she had been carrying on her shoulders vanished as she used to blame herself for not being able to handle her daughter properly. Her diagnosis helped her to seek help and understand herself better.
If Saina could get her diagnosis earlier and if intervention started before 3 years of age, her outcome would have been better and would help them to accept her daughter’s condition earlier and that would help them to seek help earlier.
Ram is aggressive and this aggressive behavior is because of his sensory issues. If the sensory problems were identified earlier and had they worked on those sensory problems, the unwanted could have been prevented. They could have primed and prepared Ram before the big event.
These are only a few of the stories and the tip of the iceberg.
Globally, according to WHO, one percent of the population has autism. US data shows 1 in 44 people has autism. In Nepal, the prevalence is not known but if projected in global data, about 100,000 to 200,000 people may have autism. Yet, in Nepal, autism is considered a new disease or mental retardation rather than a different neurodivergent condition. The awareness of the condition is limited. The families are also not yet open to sharing their stories because of the stigma that they might face. The people who are suffering most are the voiceless people with autism and their families. The support from the government, society, and school is very minimal. There are only a few organizations working on autism but these are limited to the capital, Kathmandu only. We can count in our hands, the numbers of health care professionals, special educators, occupational and speech therapists, and behavior therapists. Inclusive schools are not heard of. In that context, where will these children go and where will the family look for support?
Hyping autism is to tell and make people not only hear but listen, understand, feel, and empathize so that many more come forward for the cause. There is a cycle of demand and supply and this applies to autism also. When we demand only then there will be supply; supply of professionals, educationists.
On the contrary, we should be aware when hyping Autism. There are people trying to fish and take advantage of people’s vulnerability.
So, here I leave with a question for everyone.
Autism: Hype or not to hype?
Note: All the stories are true but names are changed. There are many other conditions that are rarely talked about and one of them is neurodivergent like hyperactivity. We hardly talk and even acknowledge or accept neurodivergence easily. If we want people to be aware and accept, we need to shout so that everyone can listen and act.
